Advancing the System of Care for Autistic Older Adults

推进自闭症老年人的护理系统

• 批准号: 10698146
• 负责人: Lindsay Lawer Shea
• 金额: $ 36.8万
• 依托单位: DREXEL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-06 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10698146
• 关键词: Acute; Adult; Adverse effects; Age; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Caregivers; Caring; Characteristics; Child; Chronic; Clinical; Communities; Complement; Data; Data Linkages; Data Set; Dementia; Diagnosis; Economically Deprived Population; Elderly; Emergency Care; Epilepsy; Equity; Ethnic Population; Family; Funding; General Population; Goals; Health; Health Care Costs; Health Services Accessibility; Healthcare; Hospitalization; Hypertension; Individual; Inequity; Insurance Carriers; International; Interview; Investments; Life Cycle Stages; Link; Longevity; Machine Learning; Medicaid; Medical; Medical Care Costs; Medicare/Medicaid; Mental Depression; Mental Health; Mental Health Services; Methods; Neurologic; Outcome; Parkinson Disease; Parkinsonian Disorders; Participant; Policies; Prevalence; Preventive screening; Public Health; Quality of life; Records; Research; Resources; Risk; Risk Assessment; Sample Size; Sampling; Science; Services; Source; Stroke; Surveys; System; Youth; adolescent with autism spectrum disorder; adult with autism spectrum disorder; advanced system; aged; autism spectrum disorder; autistic; care costs; care outcomes; care systems; cohort; comparative; comparison group; cost; cost estimate; early onset; end of life; experience; health difference; health inequalities; high risk; improved; individuals with autism spectrum disorder; innovation; insight; life time cost; meetings; middle age; mortality; patient oriented; peer; prevent; racial diversity; racial population; recruit; service delivery; suicide rate; young adult

PROJECT ABSTRACT The proposed study requests funding to conduct the most comprehensive examination to date of autistic adults (aged 40+) as they age, with the goal of gaining a comprehensive national picture of health and mental health outcomes and service needs. We will use analyses of national Medicaid and Medicare data complemented by surveys and interviews of middle aged and older autistic adults and their caregivers. The majority of research on autism spectrum disorder (ASD) has been focused on youth, but dramatic increases in the prevalence of ASD over the past three decades, the lifelong presentation of ASD, high costs of care in later segments of the lifespan, and the fact that little is known about the estimated 3.5 million autistic adults in the US who are over the age of 40, highlight the urgency of identifying the care needs of aging adults in order to improve health and mental health outcomes, costs of care, and quality of life for individuals and their families. This need for information and clinical guidance is underscored by emerging evidence of the early onset of neurological conditions such as Alzheimer’s Disease and related dementias and Parkinson’s Disease in autistic adults. As the largest healthcare insurers in the US, Medicaid and Medicare are critical sources of care for autistic adults as they age, and claims data provide a vital window for observing the prevalence and emergence of conditions, including specific neurological conditions associated with aging, and studying potentially adverse effects on health and mental health outcomes and service use. By comparing autistic adults to those without autism, we can gain further insight into comparative needs and resources. Medicaid and Medicare data are also optimal sources for studying inequities among economically disadvantaged individuals and diverse racial/ethnic groups who disproportionately experience poorer health and mental health care and subsequent suboptimal outcomes. We will link national Medicaid and Medicare data from 2014-2023, the latest years available, data about mortality, and data about communities for autistic individuals ages 40 through the end of life, and a comparison group of adults without autism. A Community Advisory Board of autistic adults will be engaged to inform a survey of a national sample of 700 autistic adults (or their caregivers), as well as interviews with a subset of survey participants, to yield contextual, real-world information about differences in health and mental health services access and utilization at individual, family, and community levels. Pairing findings from claims data with insights from the lived experiences of aging autistic adults will allow us to drive patient-centered improvements in service delivery to move toward meeting the needs of autistic adults as they age into a period of increased risk for health and mental health diagnoses. This research will generate findings that are poised to identify and inform modifiable components of service delivery through these national insurers, with potential for broad impact on the health of the autistic community.

项目摘要 这项拟议的研究要求提供资金，以进行迄今为止最全面的自闭症检查 成年人(40岁以上)随着年龄的增长，目标是全面了解全国的健康和心理状况 健康结果和服务需求。我们将使用国家医疗补助和医疗保险数据的分析 此外，还对中老年自闭症成年人及其照顾者进行了调查和访谈。这个 大多数关于自闭症谱系障碍(ASD)的研究都集中在年轻人身上，但 ASD在过去30年中的流行，ASD的终生表现，后来的高昂护理成本 寿命的几个部分，以及对世界上约350万自闭症成年人知之甚少的事实 40岁以上的美国人强调了确定老年人的护理需求的紧迫性，以便 改善个人及其家庭的健康和心理健康结果、护理成本和生活质量。 早期发病的新证据突显了这种对信息和临床指导的需求 阿尔茨海默病及相关痴呆和帕金森氏病等神经系统疾病 患有自闭症的成年人。作为美国最大的医疗保险公司，医疗补助和医疗保险是关键的医疗保健来源 对于随着年龄增长的自闭症成年人，索赔数据提供了一个重要的窗口来观察患病率和 疾病的出现，包括与衰老相关的特定神经疾病，以及研究 对健康和精神健康结果和服务使用的潜在不利影响。通过比较自闭症成人 对于那些没有自闭症的人，我们可以进一步了解比较的需求和资源。医疗补助和 医疗保险数据也是研究经济困难个人之间不平等的最佳来源 和不同的种族/民族群体，他们的健康和精神卫生保健不成比例地较差， 随之而来的是次优结果。我们将把2014-2023年的国家医疗补助和医疗保险数据联系起来，最新 可用年数、关于死亡率的数据以及关于40岁至40岁的自闭症患者的社区数据 以及一组没有自闭症的成年人。自闭症成年人社区咨询委员会 将对全国700名自闭症成年人(或他们的照顾者)及其照顾者进行抽样调查 与调查参与者的子集进行访谈，以获得关于以下方面差异的背景、真实信息 在个人、家庭和社区各级获得和利用健康和精神健康服务。配对 来自索赔数据的发现与对老年自闭症成年人生活经历的洞察将使我们能够驾驶 以患者为中心改进服务提供，以满足自闭症成年人的需求 进入健康和精神健康诊断风险增加的时期。这项研究将产生新的发现 准备通过这些国家/地区识别和通知服务交付的可修改组件 保险公司，有可能对自闭症社区的健康产生广泛影响。